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11-12-2005, 06:37 PM
Mandarra
Junior Member Join Date: Sep 2005
Posts: 11

Re: Want to talk to someone who gets hives every day..pls

-----------------------------------------------------------------HI MARY -

I THOUGHT I WAS UNIQUE, HAVING THEM FOR SO MANY YEARS BUT AS I READ ON, I FOUND POSTINGS FROM PEOPLE WHO HAVE HAD THEM FOR 13 TO 20 YEARS. I WILL HAVE TO LOOK INTO REACTINE ON THE INTERNET THEN SPEAK WITH MY DR. YOU'RE LUCKY YOUR DR. FOUND SOMETHING THAT WORKS FOR YOU. IT IS SCARY BUT JUST LET SOMEONE CLOSE TO YOU KNOW YOUR CONCERNS IN THE EVENT SOMETHING DRASTIC HAPPENS. I DON'T ANTICIPATE ANYTHING WILL BUT IT'S ALWAYS GOOD TO BE ON THE SAFE SIDE. (I'm seeing an allergist for the first time on the 24th, I was hoping he could test me and see what I'm reacting to so that I can stop eating it or whatever). I WISH IT WAS THAT EASY. I SUGGEST YOU EDUCATE YOURSELF AND GO IN WITH A LIST OF QUESTIONS AND BE SURE YOU GET ANSWERS TO THEM AND WRITE THEM DOWN. YOU HAVE TO BE FORCEFUL WHEN SPEAKING WITH HIM; NOT RUDE BUT LET HIM KNOW HOW CONCERNED AND SCARED YOU ARE. IF AT ALL POSSIBLE, FIGHT HIM WHEN HE WANTS TO PUT YOU ON PREDNISONE. TRUST ME, IT IS A KILLER DRUG. I HATE TO LEARN HOW IT HAS AFFECTED MY SYSTEM. IF YOU DON'T ASK QUESTIONS, THE DR. WILL JUST CONSIDER YOU ANOTHER PATIENT WHO HAS HIVES AND TREAT YOU AS HE DOES ALL OTHERS. YOU DON'T WANT THAT; YOU WANT TO KNOW HIS PLAN, HIS TREATMENT, PROGNOSIS AND DIAGNOSIS. HE'LL PROBABLY TELL YOU THAT "NOT MUCH IS KNOWN ABOUT THE HIVES AND WE'LL SEE AS WE GO ALONG". I TREATED WITH ALLERGISTS FOR 11 MONTHS UNTIL THEY TOLD ME THEY COULDN'T DO ANYTHING MORE FOR ME. THIS WAS AFTER THEY DID THE SKIN TEST AND LAB WORK AND FOUND WHAT I AM ALLERGIC TO. I WOULD GO IN TWICE A WEEK FOR THEM TO DO A "DRIP & WIPE" PROCEDURE. THEY WOULD DROP ONE OF THE ALLERGENS ONTO MY SKIN, WAIT A FEW SECONDS AND THEN WIPE IT AWAY. SOMETIMES THE ALLERGEN WAS DUST MITES, ANOTHER TIME MOLD, ANOTHER TIME RAGWEED, AND SO FORTH. THIS WAS TO SEE IF I HAD A REACTION ON THE AREA TO THE SPECIFIC ALLERGEN AFTER I HAD GONE HOME. MOST TIMES NOTHING HAPPENED SO THEY CONTINUED THIS PHASE FOR MANY MONTHS, HOPING TO FIND THE RIGHT ALLERGEN SO THEY COULD GIVE ME THE APPROPRIATE SHOT (WHICH NEVER HAPPENED). AT THAT TIME, I HAD INSURANCE SO I DIDN'T MIND GOING IN TWICE A WEEK AT A $15 CO-PAY. THEN I SWITCHED TO ONCE A WK. WHEN THE CO-PAY BECAME $35 PER VISIT. YOUR ALLERGIST WILL SUGGEST THAT YOU REMOVE ALL CARPETING FROM YOUR HOME (WHICH I DID A COUPLE OF YEARS AGO - A HECK OF A MESS WITH HAVING THE FLOORS SANDED AND ANOTHER EXPENSE) AND TO USE AN AIR CLEANER/PURIFIER (I HAVE 5 TABLE TOP AIR CLEANERS JUST ON MY FIRST FLOOR). IF YOU EVENTUALLY INVEST IN ONE, MAYBE ONE LARGE ONE WOULD DO FOR YOU. IT'S REALLY AN EXPENSE TO RUN, ELECTRICITY WISE IF NOT ENERGY EFFICIENT AND THE REPLACEMENT FILTERS AREN'T CHEAP. HE WILL ALSO SUGGEST THAT YOU BUY ALLERGEN COVERS FOR DUST MITES FOR YOUR MATTRESS, BOX SPRING AND PILLOWS AND MAYBE EVEN BUY NEW PILLOWS (I DID ALL OF IT). SURE, THEY PICK UP A LOT AND I HAVE TO CLEAN THEM SO OFTEN WHICH IS A PAIN, BUT I WONDER HOW MUCH THEY ACTUALLY HELP. I'M STILL SUFFERING WITH HIVES AS I WAS BEFORE I WENT THRU THIS EXPENSE (JUST UNDER $300). A FRIEND ALSO SUFFERS FROM HIVES, ALTHO NOT TO MY DEGREE. HER ALLERGIST HAD HER TAKING ALLERGY SHOTS FOR 9 YEARS AND WHEN HE SOLD HIS PRACTICE, THE NEW DR. TOLD HER SHE DIDN'T NEED THE SHOTS. FOR THE PAST YEAR SHE'S BEEN HARPING ON ME ABOUT GETTING THE DR. TO GIVE ME ALLERGY SHOTS. GOES TO SHOW THE DRS. REALLY DON'T KNOW WHAT THEY'RE DOING. WITH SO MANY OF US SUFFERING WITH THEM, THERE SHOULD BE MORE RESEARCH ON HIVES. I'VE READ SO MUCH FROM THE INTERNET BUT ALL THE SITES SAY THE SAME THING....."NO CURE; WILL STOP ON ITS OWN". WE SHOULD BE SO LUCKY TO FIND A DR. WHO SUFFERS FROM THE HIVES HIM/HER SELF, THEN THERE WOULD BE SOME ACTION TAKEN. YOU COULD BE ONE OF THE LUCKY ONES AND ONLY HAVE THEM ON A TEMP. BASIS - I HOPE SO. (Also, my hives burn more than they itch, and they are giant sized). MINE BURN AFTER I'VE SCRATCHED THEM AND THEY BECOME OPEN. I HAVE SCRATCHED MY ARMS SO BADLY THAT I'VE BROKEN BLOOD VESSELS AND HAVE SUCH HUGE BRUISES ON MY ARMS THAT PEOPLE MIGHT WONDER IF I'M BEING ABUSED. THIS IS WHEN I DECIDED TO USE THE LOOFA PAD TO SCRATCH WITH. I KNOW ABOUT GIANT SIZED. ALSO, WHEN I TOUCH THEM, THEY ARE HOT TO THE TOUCH. I'VE MENTIONED THIS TO THE DR. BUT HE DIDN'T SEEM TO THINK TOO MUCH OF IT. I BET IT IS SIGNIFICANT OF SOMETHING AND THEY DON'T KNOW HOW TO ADDRESS IT. UNTIL RECENTLY I WAS FIGHTING THE FACT THAT I HAVE TO TAKE THE PREDNISONE ON A REGULAR/STEADY BASIS. NOW, THE ONLY WAY I CAN FUNCTION NORMALLY IS TO BE ON A STEADY REGIMIN - TAKING ONE EVERY 12 HRS. OR SO, WHICH IS WHAT I'VE BEEN DOING FOR THE PAST WEEK AND ALTHO I CONTINUE TO BREAK OUT SOME, IT'S TOLERABLE. IF I INCREASE THE DOSAGE I PROBABLY WOULDN'T EVEN GET THEM. THIS IS WHAT I'VE BEEN TRYING TO AVOID. THE MORE PREDNISONE I TAKE, THE MORE WEIGHT I PUT ON AND THE MORE BLOATED I BECOME. I MAKE SURE I HAVE PREDNISONE WITH ME WHEN I GO OUT. SOMETIMES WHEN I TAKE IT, IT DOESN'T KICK IN FOR A FEW HOURS. I THINK I'M GETTING IMMUNE TO IT. ALTHO I HAVEN'T TALKED WITH THE DR. ABOUT IT, THERE IS TALK ABOUT CARRYING AN "EPI PEN" TO USE IN THE EVENT OF AN EMERGENCY. I'VE LOOKED INTO THIS BUT ONE THING THAT DISUADES BE ABOUT THAT IS, AS I'VE READ ON THE INTERNET, THE PEN CONTAINS SULFITES. I DON'T EVEN THINK THE DRS. KNOW THIS. WELL, ANOTHER SUBJECT; SULFITES CAN CAUSE HIVES AND SO MUCH OF OUR FOOD PRODUCTS CONTAIN SULFITES. READ LABELS AND YOU'LL SEE. ANOTHER FRIEND STAYS AWAY FROM SOY. IT'S SAID THAT BREAD ALSO CONTAINS SULFITES. SOME DRS. SAY TO STAY AWAY FROM WHITE BREAD (THE BLEACHED FLOUR); OTHERS SAY WHEAT IS NO GOOD FOR US. WHO ARE WE TO BELIEVE WHEN "THEY" DON'T KNOW ALL THAT MUCH ABOUT IT. I JUST REMEMBERED SOMETHING ELSE.....THE INSECT REPELLANT SPRAY, "OFF", SOMETIMES CONTROLS THE ITCH. IT'S COMPARABLE TO THE BENADRYL SPRAY, MAYBE A LITTLE BETTER. SORRY FOR THE "NOVEL" BUT WHEN I GET STARTED, THERE'S NO STOPPING ME. MARY P.





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